Gary is a patient diagnosed with VPS13A disease (chorea acanthocytosis) who lives in Oxford, UK. Gary volunteers his legal skills together with his real-life experiences of managing in a wheelchair to people who can initiate change to benefit many disabled people. He was involved recently in a consultation with Oxford City, Oxfordshire County Council and Transport for All. He shares his view on his Facebook profile, and he also keeps in touch with Ginger Irvine, our Chair and Co-founder by phone or by email. This is his most recent update where he shares his views on important topics related to disability related policies in the UK and his activity to raise awareness about these issues. 

“I apologise for being slow to respond. Typing is increasingly problematic. Due to the progression of VPS13A along with Diplopia and Severe Ischaemic Cardiomyopathy a significant decline in coordination is noticeable. Throw in the stressors caused by the government’s “painful choices” mantra has every person who is disabled or cares about us are all impacted by the expectations of the Chancellor’s impending Budget Speech on 30 October. 

I am more than happy to review and share information that I have received regarding the challenges that we face on a repeated basis. The new changes will be implemented without considering that the Equalities Act and the Disability Rights Act makes these changes a flagrant disregard for these laws. 

Kerb drops, poor pavements and tarmacs, and the lack of available and affordable transportation options are creating an environment where we are no longer capable of getting out of our homes without risks of injury or harm. The lack of level platforms and the contempt by 97% of train services, our sole option for public transportation use further isolates us and instils a relaxing of our public visibility. Ableism is alive and well in the United Kingdom. 

The UN recently reprimanded the Department for Work and Pensions (DWP) and the Government for failing to maintain their role as a nation that fully supports the rights and freedoms that the Disabled deserve. It’s a situation that I am not comfortable with letting our rights and awards by the DWP to be stripped away every time the government needs to find a solution to their fiscal problems. 

I am not sure of how long I have left in my life, but I want to make a positive impact for every person whose disabilities limit their ability to live, work or be seen by others, because visibility is critical to our society and the perception of our existence long after my life comes to an end. 

I will do everything to make sure that the future continues to remove the stigma and prejudice of who we are as Disabled people with value, dignity and access. This is a very daunting task, but for as long as I am able to do so, however long or short it is, I will continue to push for the de-stigmatisation of being disabled.

Please pass on my warmest regards to Alex. Thank you, Ginger, for all that you do to help us through a cruel disease, that is still pushed to the side due to the limited population that is impacted by neuroacanthocytosis (NA) syndromes, and limited resources because of the lack of financial gains in the treatment of the four types that impact so few globally. Stay strong and well, dear friend.” 

Are you doing anything similar in the area where you live? We’d love to hear your stories from the areas where you live and how things are done somewhere else in the world. This is how we can inspire each other and create waves of useful changes.